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Author
Topic: ready for this butt whipping (Read 4704 times)

Ok I'm a 25 year old single mother of a 3 year old sonI'm very new to this but I need to vent/know if anybody else felt this wayI been HIV+ for 7 years now and 2 years ago I had to stop going to the care I was going to for 5 years bc of my age which made me very depressI was so connected to everyone there they seen my highs and lows I got depressto the point that I stop taking my meds and just to put things in a nut shell the care I'm I'm now I hate I know I'm comparing the two but I just don't think the clinic is for me may I add I am in a diff state now which is a big city but the healthcare sucks hereToday I realize that I'm being very selfish my son needs me I just don't know how to get out of this funk A lot o my family know that I'm positive but o don't feel like anybody can understand my life nowSo I don't talk much to them about itThe hardest thing right now is I have been bless enough over the years to never get sick from anything HIV related so even though I know I should be taking my meds I'm not gonna lie its hard to do when you don't look or feel sick

So, you started with a provider of care and then had to stop going because you were 23 years old? Why did that stop your care?

Sounds like some pretty rough going for you and hopefully the sunshine and inspiration to keep going is your precious son.

If I'm reading your post correctly, you moved to a big city away from the nurses and docs who knew you best and now you've stopped taking your meds.

I want to flip around your thinking for a moment. You say it's hard to stay on meds when you don't look or feel sick. That's because most of us take cold medicine when we feel rotten, or antibiotics for an infection -- but you're right this is different.

SO -- look in that mirror of yours and say to yourself my meds will help me stay looking good and not feeling sick. Come at it as prevention of something worse.

I also want you to look at that lovely little boy of yours and imagine him older, visiting you in the hospital and wondering why you didn't take care of yourself. You want to be as strong and healthy and around long enough to see him get into school, marry and more.

Can you hook up with a counselor for your depression? That would help smooth things out a bit, don't you think?

Bc I was going to a children's hospital and once you turn 23 you have to move into adult care

I now live in new Orleans and believe it or not a lot of things didn't come back from Katrina

I just don't feel like myself here before I left care at my other clinic I never missed one doctor app or never missed my meds in the year in a half I was taking them

But today I woke up to my son just as happy as could be and o thought to myself like damn I'm really being selfish he needs me so I call the clinic I "go" to know only to be told they can't give me any meds right now and can't see a doctor until 2 weeks from now and to tell the truth I can't even remember the last time I took my meds

Generally for most of us, once we start taking meds, we take them for the long haul. Therefore, if you are thinking about taking medicine again, a two-week wait to see the new doctors in the new city, its really nothing. Don't be discouraged.

Personally, reading your posts, I feel that you have "blamed" your abandonment of medicine on your disappointment about health care, and about the poor health care you now have access to. What do you think... Is that really rational of you?

By this I mean. All of us HIV+ people who take medicine and go to doctors, do it for OURSELVES. for our families....

We don't do it because we like the medicine or because we like our doctors. What we feel about the medicine and about doctors and clinics, hospitals - these are SECONDARY. If we have a good doctor and can afford our medicine, well God Bless, one nice thing added to our lives, one less problem to deal with. If we have a bad doctor, we try to switch. If its difficult to pay, we look for every solution, and get professional help on all that. We dont give up our treatment, because we are doing our treatment to stay healthy and alive.

It may be, that you need the authority of Health Care and a Doctor to tell you to take care of yourself. Is that it? You want a doctor to do some butt whipping?? Maybe, if its true, you don't take care of yourself alone, but need authority, then you have two choices.

1) Be brave enough now to get yourself plugged into New Orleans health care, and see if its as bad as you think. Maybe your doctor will turn out to be one of the good ones, after all! But in the long run, our contact with doctors is very very very small in our lives.... They can't do all that much butt whipping. But yeah, personally I respect my doctor's KNOWLEDGE about sickness and health so when he tells me to do something, that is a sort of butt whipping.

and

2) Perhaps if you need some outside authority, its time to tell some family members and ask them to "but whip" you into taking care of yourself. Family. Or Friends. See them all the time. Someone can be a source of support and authority too, if you need it.

I wouldn't feel ashamed if that is what I needed. Sometimes we don't have enough energy to watch out for ourselves.

Ideally, finally, you want to work to a place where you, yourself, have enough power to take care of yourself, for yourself, and for your child. He needs you to stay healthy!

« Last Edit: October 24, 2012, 07:10:54 AM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Bc I was going to a children's hospital and once you turn 23 you have to move into adult care

I now live in new Orleans and believe it or not a lot of things didn't come back from Katrina

I just don't feel like myself here before I left care at my other clinic I never missed one doctor app or never missed my meds in the year in a half I was taking them

But today I woke up to my son just as happy as could be and o thought to myself like damn I'm really being selfish he needs me so I call the clinic I "go" to know only to be told they can't give me any meds right now and can't see a doctor until 2 weeks from now and to tell the truth I can't even remember the last time I took my meds

Thanks Justa -- I thought it might be aging out but wasn't sure. Sounds like you had a smooth line of care then two blips. So, yep it's a drag they couldn't put you on the schedule right away, but you know there are others ahead of you in the line. You know, I have a suggestion...call them back and just ask if they have a cancellation list. If they have a last-minute gap, are you able to get there fast?

Recently, I've gotten multiple doctor's appointments (not HIV, but only because I haven't tested it) because they've welcomed me to call for cancellations. Get this -- my daughter and I were scheduled for specialist doctor appointments, back to back, to save time for all and they put me in for January. By calling as they instructed, I got my daughter in one week later and myself in the week after that. Then, I did it with my dentist, and got both of us in months earlier. In your case the wait isn't as long, but you might be able to get in a little faster and it will make their schedule more productive, too.

If they run a list, they'll call you. Just a suggestion. The two weeks will pass quickly. I think you already know that you're gonna be your own butt whipper and hmm, you're thankfully past the butt wiping stage with your little one. Wipe the slate clean in your head, be honest with your doc, try to get a woman if you can, see if they have a counselor for a little extra support, make the commitment to your meds, get a weekly pillbox to help you keep track and look forward not backward.

Just want to thank yall for the wisdom bc like I said before I really feel like o have nobody to talk to about this bc they can never understand how it feels to walk in my shoes bc they never have to to hear this from people who might have to deal with the same things I do is really uplefting

I know for a fact this meds lifestyle will not be easy (for me its more of a mentalthing never had anyside effects and they always did what they were suppose to) but I will keep trying

And just to give yall a lil more background on me I didn't have to get on meds bc it was time I was on a research study that's why my doctors believe that I'm stil healthy once I took a "break" off them which I know still don't give me a right I know this is something I have to do for the rest of my life but I'm happy yall took time out to give me some wisdom

I started taking the meds right before my 21st b day the research study was about to see if its a good idea to start people on meds right away when they 1st find out or in the time frame they have set up for us now

But about a year in a half into the study got pregnant with my son still took the same meds which did well for us bc he's HIV-

Once I had him I moved back home around family which was 3 years ago so I been off my meds if I have to guess which I do about a year or almost a year

It's a lot harder to get the meds here then what I'm use to I know I'm being lazy and a baby about things to tell the truth before I came back home I was so into my health working out to try to lose wait always asking my doctors question about my labs knowing my cd4 and vl by heart talking to the youth that came in I was damn near the face of the clinic for young women but here totally different

Thanks for the extra info -- reads as if you might have been on the START study.

So, you've had quite a break from meds.

To do right by you, your local team has to reassess you, build a chart on you, etc.

Give them a chance to truly show you their stuff -- might be different folks, different style, but take a deep breath, let them into your life. You're going to find someone there whom you connect with -- and sometimes, one is all it takes!!

Its better to know your blood numbers than not. Right now you may be worried about needing drugs but maybe your break from medicine is working out fine.

So, only tests can tell.

Even if a clinic is filled with bullies or bad tempered people, try to let it slide off your shoulders. The most important thing is to see results of some labs.

(And maybe the doc or nurse will be a satisfactory contact. Even so, if they are all awful - doesn't matter. You deal with them a couple hours every couple of months. All the rest of the time, if you have regular labs, you know where you are, health wise. So YOU get to control your feelings and your life.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Just remember that if health care workers or social workers are jerks, you still deserve your care, so go ahead and get it and ignore the jerks as much as possible. Just get what you need, thats the most important. You may Find the pearls. A lot of people who go into health care and social work, they are good people, they can just get stressed out or burnt out, like in any other job. Most people still try to do a good job, even if they are disagreeable. In the end, just get the health care and info you need for yourself and your son to have a great future.

« Last Edit: October 25, 2012, 06:19:55 AM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

I always think it's important to go with your gut. Your relationship with your healthcare providers is one of the most important ones you will have, when dealing with an illness like HIV. I've gone through a lot of doctors in the last 20 years, and maybe half of my changes were due to conflicting personalities and/or treatment paradigm.

It's hard to be your advocate when you feel put down. dismissed, depressed, and alone. Please know that you are NOT alone, and that this forum is (in addition to being a hotbed of squabbles about emerging HIV science and treatment) a VAST network or people who can, and will go FAR out of their way to help you.

And, of course, it's not just you- it's also your son. We can no more take him out of the equation than YOU can. And that's the extent of my butt-whipping on the subject

I am really glad that you are finding a way to reach out and connect - both here, and locally to find a provider you can trust. That alone tells me that you are already heading towards higher ground.

I wish I had good advice for getting out of funks. For me, it's easier because I have pets, not human children (and the world is a better place.) I just sail into the storm, and lash myself onto my friends and family, and selfishly run right through the damned thing. So far, I have lived through those dark places. Might be there will come a time when it's not nearly enough. Hope not, because I really don't have much in the way of a backup plan.

I do have a favorite line from a favorite cancelled TV show that I think applies:

“If you can’t run, you walk. If you can’t walk, you crawl. If you can’t crawl, you find someone to carry you.”

-Firefly

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Hi Justa; Welcome to the forums. As you are already seeing, this is a great place for support and information.

Just based on the title of your thread I can tell that you are a smart young woman - and you will be much better off if you let your intelligence define who you are and what you do rather than your frustration. That is not to minimize your frustration and feeling alone in any way -- I really have compassion for you.

As a parent myself I expect that there are other challenges that you are dealing with too. When my daughter was three I had many tiring and trying days - we were up at least once a night (if not twice) and had the "terrible threes" -- which was exhausting physically and emotionally.

I will go with my gut and hopefully going to a differentclinic will help me the most I know for a fact I need to better in taking of myself not just talking about my HIV meds either I need to get on the ball and drop these pounds too

Hi @pat

And yes your right its 1000 more things going on in my life that I can worry about other then my meds that's one of the reasons its so easy for me to not worry to much about not taking meds if I don't feel sick at all I guess as yall say its the new pozzies way of thought I can admit that about myself

You have HIV. Even if you feel healthy. You are like me, lucky that you got HIV in this day, these years, when there is treatment. Very very good treatment.

It does not help at ALL to keep your head in the sand and "forget" that you are HIV+ just because you feel fine. FEEL FINE! AND, have the peace of mind to know how your body is doing. You do NOT want to be in a situation where suddenly, you are very very sick. Feeling fine, feeling fine, while your immune system is completely destroyed. You do NOT want that, and you owe your children something better.

If you feel fine now, chances are you are pretty healthy now! Get your numbers, and, and stay healthy. Be a healthy mom forever, you'll have grandchildren!!!

ALso, please do NOT think you need to get on a FITNESS kick. Or that you HAVE to lose pounds. As if that has something to do with taking charge of your HIV infection.

It is 2 different things. HIV is controlled genetically until it is NOT, and then it is controlled with medicine. Its simple.

You can be fat or thin, lazy or a fitness freak, this has little to do with HOW you will do living with HIV. Don't make a mountain out of all your health issues.

Believe it or not - taking charge of HIV is a no-brainer. It is probably a LOT easier to be in charge of keeping HIV in control, than losing weight or becoming super fit.

So keep these issues seperate. Don't say, Oh, I had better learn to eat right, before I bother taking care of my HIV. Wrong. Apples and oranges.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Don't get me wrong I know for a fact that they have nothing to do with each other but I been heavy set damn near all my life to me its more then just getting controll of my HIV but also of my health altogether I don't want to be u/d but die from weight issues

I hear you. But please don't bundle the body weight, or worse discontent about that, with the HIV. Really. Diet and exercises is going to be your strength and willpower!

HIV - you go, you get your blood work, you follow your progress, you figure out how to afford meds, you take your meds... Please don't think you need a total health plan to start taking care of HIV. Little steps.

I guess I'm repeating myself. Sorry. Its important though.

"to me its more then just getting controll of my HIV but also of my health altogether I don't want to be u/d but die from weight issues"

We all want to improve ourselves in different ways. But HIV is a different kind of beast on our backs. Annoying virus with absolutely no morals (for us!) and very treatable. Its sometimes a bitch dealing with the social aspects, financial aspects, the stigma. But you really want to do this from a position of HIV being completely kicked, defeated, not a threat to your long and healthy life. I think keeping HIV separate from all the other weights on your shoulders could help make it easier for you to keep following up on your hiv.

« Last Edit: October 25, 2012, 06:07:52 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Don't get me wrong I know for a fact that they have nothing to do with each other but I been heavy set damn near all my life to me its more then just getting controll of my HIV but also of my health altogether I don't want to be u/d but die from weight issues

It's just time for me to get my life under control

I totally get you. Again, go with your gut. Wanna lose some weight? Go ahead. Do whatever you want to do -- sometimes it's issues like choking down an addiction that make you realize you can exert control at a time when viruses, feeding schedules, and people are exerting their agendas. The added benefit of exercise it is highly recommended to combat depression and anxiety. The best news about this -- it's you focusing on you.

I have been taking in all this trust to me its differentwhen someonewho have been in your shoes tell you one thing then somebody who couldn't dream how it could feel to be in my shoes try to give me advice about something the know nothing about

Even though I'm young any meny people eyes I feel like I will be 26 in a couple months so I need to get on the ball if I really want to change my life